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  • In the Media

    The search for the world's 'missing' genomes

    BBC |
    Enormous strides have been made to unravel the secrets of the human genome, so why are we missing the genetic information of most of the planet?
    • Inequality

  • News

    March 2025 ELSI Journal Club Resources

    Session’s Featured Paper: Opportunistic genomic screening has clinical utility: An interventional cohort study Date and time: Friday, March 28, 2025 | 12pm ET US / 9am PT US Featured Author:…

  • Grant Abstract

    The ethics of consent for the public release of potentially identifiable DNA data

    A major ethical and policy challenge facing genomics research stems from the existing mandate for rapid public release of all sequenced DNA data. It is now clear that an individual can be uniquely…
    • Benefits and Risks
    • Biomedical Research
    • Classification
    • Clinical
    • clinically relevant

  • Research Tool

    ELSI Research Methods Questionnaire

    Cho and colleagues created this questionnaire to understand the research methodologies currently being used in the study of the ethical, legal, and social implications (ELSI) of genetics and genomics.

  • News

    ELSI in Review • April 2025

    About this listing ELSI in Review is a listing of recently published reviews of the literature on key ELSI topics curated by CERA staff. Our April 2025 set explores ethical considerations of…
    • gene therapy
    • germline gene editing
    • CRISPR-Cas9
    • Artificial intelligence
    • precision medicine

  • Publication

    Proceedings [of the] International Bioethics Committee of UNESCO (IBC), seventh session

    UNESCO
    UNESCO
    Digital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National…

  • Grant Abstract

    Behavioral and Psychosocial Effects of BRCA1 Testing

    This research project will offer genetic testing to approximately 400 adult men and women who belong to a large kindred which has been found to have markers on chromosome 17q that are tightly linked…

  • Research Tool

    Common survey items, eMERGE participant survey at 6-12 months post disclosure

    This survey covers disclosure of genetic test results to family members, follow up care, behavior changes, and other topics. It can be administered using REDCap.

  • Grant Abstract

    Optimizing Prenatal Testing Decision-Making

    This project will study the role of patient preferences and other factors in choices regarding use of prenatal screening for and diagnosis of chromosomal disorders in a racially/ethnically diverse…
    • African American
    • age at pregnancy
    • Amniocentesis
    • Asian Americans
    • behavioral /social science research tag

  • Video

    ELSIconversations - The Misuse of Genomic Data, Session 2

    Full title: What Can Geneticists Do to Address the Misuse of Genomic Data? Purdue University and CERA Collaboration Recent, but reemergent misuses of genetic data and research remain a critical…
    • Genomic Information
    • genomic data
    • genomic data privacy